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The Difference Between Curiosity And Pain (Part 2: An Alternative)

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Many years ago my mother had heart surgery. The procedure was relatively new then. I flew in to be with her before and during the surgery. I left behind a chronically ill husband and two young children. I would spend all day at the hospital with my mother and then come back to her apartment and start dealing with the phone calls.

 

Was I sure my mother had the right doctor?

 

Maybe I should get a second opinion?

 

Was everything being done for her that could be?

 

Were there alternative procedures that could be put in place?

 

Did I really want her to do this?

 

Between the messages on the answering machine and the beep of call waiting, I spent my evenings fielding questions from concerned relatives and friends that sounded like insults, retelling the same doctor reports and reporting on her condition and the events of the day over and over again to each person who called. Then, once the incessant calls stopped and the answering machine was empty of messages to return, I could call home and check up on my family. Finally, long after midnight I could go to bed and start the routine all over again the next day.

 

Today, with computers in many homes, the whole scenario can be quite different. By simply opening a website, you can update family and friends on a sick person’s condition by writing it at your site, once, and allowing people to log on for an update on that person’s condition. No need to answer phone messages and incessantly repeat the day’s events. Anyone wanting to know the latest can simply log on and you can update the daily progress.

 

If people want to be supportive or give you ideas, they can type it into the website. In this way, you can, if desired, explore the comments and suggestions on your terms, when you are feeling up to it. You can keep the supportive messages if they are helpful. You can log into them when the day is bad and some support is needed. If people want to share their ideas on care with you, you can use the computer in the same manner. Scan what people have written, when you are up to it.

 

Save what you may want to investigate further. It is there for you to go back to when you have the strength to do it. And as far as the inappropriate comments, insulting suggestions and challenges, they are gone with the press of the delete button. How I would have loved to have a delete button in those years before computers. But, they are here now and caregivers need to use them to their advantage.

 

Should you want to follow up on some suggestions sent to you, you are free to respond and ask them to elaborate. But here, the key is that you are in control. Unlike the phone, you can go “online” to communicate 24 hours a day and participate in a dialogue only when you want to.

 

You can put this in place by simply putting a message on your answering machine, letting people know where to log on for an update on the sick person’s condition. Or you can initiate it by sending a message to everyone in your computer phone book, letting people know you will be sending them regular updates. You can ask people not to respond, or you can say nothing and expect responses. You can ask people for their tefillos and Tehillim and let them know your loved one’s Hebrew name for a mishaberach (prayer for the ill). You can request visitors for the ill person or ask people to stay away. But on the computer, you only have to do it once and leave it in print to be read and reread instead of being asked, by phone, over and over and having to repeatedly explain yourself.

 

Whether you open a blog, e-mail your address book, or develop a site, your computer can become your personal secretary in a crisis. It will enable you to screen your calls, handle unwanted advice, redirect people and delete inappropriate comments without insulting anyone. Mostly, it will allow you, the well spouse or caregiver, to conserve your energy and deal with yourself in a more healthy fashion. It will enable you to deal with the situation to the best of your ability, without guilt imposed from the outside and without alienating anyone that you may need to find the time and energy to apologize to later. In a time of crisis as a well spouse, your computer may be the closest thing you may have that resembles a caregiver for you. Don’t be afraid to use it.

 

You can contact me at annnovick@hotmail.com

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More Articles from Ann Novick

When one is blind one learns to use Braille to read. When one cannot walk, a wheelchair gives mobility. Sign language allows a mute person to speak and ocular implants assist in hearing when one is deaf. These are all compensatory strategies that help a person function despite his disability. But compensatory strategies are not just for physical problems. Understanding our psychological weaknesses and setting up our lives to ensure that we are not tempted to repeat our past mistakes, is as necessary as any aid to the disabled.

Well spouses have often discovered that their friends and relatives, despite their closeness to the situation, often don’t realize the tremendous emotional impact living with chronic illness has on the family. With the best intentions, suggestions, ideas and criticism are offered, based on the non-experience of those with healthy families. Even when the good intentioned get a taste of the difficulties, it is sometimes not enough for them to then identify and understand what the family of the chronically ill must face on a constant basis.

Over the past two weeks I have shared letters from a therapist and a well spouse. Both of the letters gave personal insights into the process of losing hope, how we react when that happens and some ways of coping when test scores, diagnosis and just simple repetitive behavior indicate that change for the better is impossible.

Dear Ann,

I’ve read your last few articles on psycho-neurological testing (Oct.8-22) with interest. As a therapist who has counseled couples dealing with chronic illness, I’d like to give you another perspective.

Dear Ann,

Your articles on the Neuro-Psychological Testing were right on (October 8-22). My husband underwent testing twice and your articles explained it things exactly the way they were. Besides the test, we also tried therapy.

Very often when we can’t face our big hurts or big loses we focus on the little ones. We can discuss those. We can cry over the small loses, be angry at the smaller hurts even though it may look trite and sound ridiculous to others.

Over the last two weeks we have been discussing one way in which well spouses can determine whether behavior displayed by their ill partners is caused by their illness or is a way they have chosen to act. We have focused on Psycho-Neurological testing, what it can tell us, as well as its pros and cons.

Last week I discussed a question that haunts many well spouses: not knowing if the difficult and often inappropriate behavior frequently displayed by their partners are caused by the disease and therefore not-controllable, or if the behavior is a choice the spouse makes and can therefore be changed. This doubt can be the source of much frustration and many marital disagreements. One way of alleviating this doubt is by having a psycho- neurological work up done. But that path is not so simple.

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